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International Rare Disease Day

Today sees the fourth International Rare Disease Day, organised by the European Organisation for Rare Diseases

Today (February 28) sees the fourth International Rare Disease Day, an annual campaign organised by the European Organisation for Rare Diseases (EURORDIS) to raise awareness of life-threatening and debilitating diseases that affect a comparatively small percentage of the population.

This year's campaign focuses on health inequalities, with EURORDIS highlighting such issues as a lack of medical experts and knowledge about rare diseases, as well as a comparatively limited amount of care and research.

There are thought to be between 5,000 and 8,000 rare diseases worldwide, with more than 60 million people in Europe and the US affected alone.

Yann Le Cam, CEO, EURORDIS, explained some of the issues people with rare diseases face: “Many are fighting to obtain life-saving treatments or to be reimbursed by their health authorities. Others are denied access to specialised services and to disability compensation.”

Events for 2011 include a conference in Brussels organised with the European Commission to discuss health inequalities, with participants including Antonyia Parvanova, MEP, who is involved with the EU Directive on cross-border healthcare and patient mobility.

On February 28, EURORDIS is hosting a live stream of this European Symposium on rare diseases, with talks throughout the day until 4.45pm CET.

 EURORDIS' live stream of this European Symposium on rare diseases

28th February 2011

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